Honeymoon, honeymoon phase, Parkinson’s disease. When I hear the word honeymoon, my thoughts take on a slightly rosy glow, they sparkle, and I think of love and happiness, curiosity and joy, two people who have chosen each other, life and love. “Honeymoon” — the first period of marriage, when couples get to enjoy happiness, love and an improved quality of life. But did you know that one of the phases of Parkinson’s disease is called the honeymoon phase?
Linking Parkinson’s, a complex neurological disease that affects the nervous system and the ability to move, with a honeymoon feels strange, even contradictory. How can a disease characterised by neurological challenges and progressive symptoms have a phase that resembles the joy and happiness of a honeymoon? Even though the term feels wrong, I think it is an interesting question to explore and, if possible, try to understand.
I read about the honeymoon phase, and it is described as the period of the disease when one may experience a significant improvement in symptoms. Examples of what this may involve include stiffness and tremors decreasing or even disappearing completely, and everyday activities returning to a more normal level. The honeymoon phase is described as a period when both those affected and their loved ones may experience relief, joy and an increased quality of life.
During my search for information, I was somewhat lucky, and among all the material I read, there was a report that addresses the concept and presents the following explanation of why it began to be used:
“The term ‘honeymoon period’, which first appeared in scientific articles in the late 1970s, was originally intended for use within medical circles as a pragmatic way of separating the different phases of the disease, particularly the first 2–5 years.
…Over the past four decades, the term has circulated widely in the scientific literature, in neurology books and at conferences, and has become synonymous with early-stage Parkinson’s disease.”
(my translation)
(Source: Journal of Parkinson’s Disease, vol. 13, no. 3, pp. 323–328, 2023)
The report presents an explanation of the origin of the term “honeymoon period”, and the authors write that the concept “…first appeared in scientific articles…” and was used to clearly distinguish the early phase from the later phase of Parkinson’s. The later phase referred to is the one in which the symptoms are pronounced and the person affected is clearly impacted. Initially, the term was only intended for use within medical circles, but its use spread, and the term began to take on a life of its own, becoming synonymous with early-stage Parkinson’s disease.
This explanation of the origin of the concept feels logical and is enough for me.
Furthermore, in the report, the authors explain — and this is interesting — that the term honeymoon phase was chosen in relation to the pronounced symptoms of the later phase. In other words, they saw a clear deterioration in people with Parkinson’s in the later phase and then chose to call the first 2–5 years, with few or no symptoms, the honeymoon period.
To me, this feels cynical or backwards. As if the term had been chosen based on the thought: “Over time, things will become really bad for people with Parkinson’s, so we will call the best period the honeymoon.” Something like that…
But that is mostly a feeling I have, and I do not actually believe that this was why the term honeymoon phase was chosen. Rather, I think it was about clearly distinguishing between two diametrically different periods of a disease.
When I first heard about the honeymoon phase myself, it was during a doctor’s appointment, and it was presented as something positive and explained with the words:
You have about five years during which you will not be directly affected by your disease, and the treatment will work well.
Then we will take it from there.
I remember that conversation, even though almost five years have passed. I remember the word honeymoon, and that it would last for a limited period. That the treatment would work well, have the desired effect, and that everything would be more or less as usual. That in reality it would mean an improvement in both motor and non-motor symptoms.
Since then, I have spoken with many people about the first period after diagnosis, and most agree that it is a turbulent time. A difficult period during which, among many other things, one starts treatment, tries to learn what the diagnosis means, and struggles with all the questions about how life will be affected. This is particularly clear in the stories in my book Parkinson Power: Ten Women Tell Their Stories. I do not think I can remember anyone, either in conversations or in emails, describing the first period as a honeymoon.
And then I am back where I started, back to the words: honeymoon and honeymoon phase. Back to the beginning, because I still cannot make it add up. I still cannot see that a disease characterised by neurological challenges and progressive symptoms has a phase that is supposed to resemble the joy and happiness of a honeymoon. Because my image of what a honeymoon is does not correspond at all with what it is like to live with Parkinson’s.
A honeymoon is the rosy glow, the sparkle and joy, dreams and possibilities — and that is how I want it to be. My Parkinson’s is, was and will remain something else.
Thoughts and reflections on a concept one hears now and then, written in June 2023.
Cecilia Qwinth